"Go where your best prayers take you."(Fredrick Buechner) *** Lessons learned from a vocation in hospice

I found myself visiting a man who was hoping to begin hospice. His family was present as well and it was obvious how much they loved him. All gathered seemed to appreciate the benefits of hospice—their loved one could stay at home and they would have a nurse, CNA (certified nursing assistant), social worker, and chaplain on their team. They also were happy to hear that the doctor would visit him at his home—no more laborious trips to the doctor’s office—and that they could call 24 hours a day with concerns/questions. However, when it came time to discus the gentleman signing the DNR (Do Not Resuscitate), tension emerged. The man was eager to sign it—he understood he was suffering from a terminal illness and did not want to be hospitalized. His wife on the other hand could not bare the thought—she felt to sign the DNR was to give up on him. Up until this point, they had never talked about death/dying.

I encouraged them to talk to each other in that moment—what were their hopes for the time they had together now? What were their fears? The man in question shared openly that he knew his time was short. He wanted to soak in his time with his family and to die in the comforts of his home. His wife said she was beginning to accept his time was short—but, she was afraid to say good-bye. As they spoke honestly with one another, a theme began to emerge from the husband’s perspective. He could not choose whether or not he would die—his diagnosis was terminal and there were no curative options. But, he could choose how to say good-bye– surrounded by family, and at peace. Though it was difficult for his wife, she finally agreed feeling it was the gift she could give him at the end of his life. This scenario is so often repeated in life–not just in my vocation.

How do you want to say good-bye at the end of your life? The question is not just about who you want to make decisions for you if are no longer able or even about whether or not you want life support. The questions need to consider how you want to be treated. The questions also need to consider what you want your loved ones to know before you die—forgiveness, love and gratitude.

When I first began this blog, I recommended a wonderful resource, “Five Wishes”. Their website states,

Five Wishes lets your family and doctors know:

Who you want to make health care decisions for you when you can’t make them.

The kind of medical treatment you want or don’t want.

How comfortable you want to be.

How you want people to treat you.

What you want your loved ones to know.

Nothing is easy about losing someone you love or about coming face to face with your mortality. And yet, we each must face it someday. To say good-bye to someone we love can feel unbearable. At the same time, there is opportunity to craft the good-bye in such a way that peace in the midst of sorrow may exist. This document makes a difficult conversation about death/dying easier and provides a way to make your wishes known. Please, take the time to look at it. And please—take the time to fill it out and talk about it.

According to “Today’s Caregiver” 10% of Americans will die suddenly. The other 90% will die more gradually—often over a longer period of time. However each of us will ultimately face our death, there is one statistic that can’t be ignored…100% of us will die. That said, death—our own mortality—is not a popular topic of conversation. I certainly understand why it is not easy to talk about—to say good-bye to someone we love, even if one believes in Heaven or a concept of the after life, is difficult. To no longer hold their hand, hear their laughter, feel their embrace…And the thought of one day (prayerfully far, far, far in the future) of not being near by to be part of my daughter’s life leaves me feeling like there is a hole in my heart. Death is so very final.

At the same time, as a society, I believe we ought to talk more about it. We so willingly talk about everything else—money, love, sex, etc. But if the topic of death comes up, so many shut down. We need to start talking. The final months/weeks/days prior to dying are the last opportunities we have to be together—at least here on earth. Those are the moments to share the words of forgiveness, gratitude, and love. To share a favorite memory. To hold a hand. To gently kiss the forehead. Those are the moments to hold each other in love. (Although I also argue we ought to be doing these things for each other throughout our life)

Over the following weeks, I will be writing about death/dying. First—defining (as much as possible) how you would like to be treated at the end of life. (IE: Would you rather be in the hospital or home? Will you want people near by you, or privacy? The list goes on…) Second, what happens to a person as their death approaches—physically, spiritually, and emotionally. And third, how one can provide comfort to their loved one in the final days/hours.

My prayer is that by speaking directly about death—so often a taboo topic—we may demystify it. By speaking about death, we may begin to find peace. By speaking about death, we will better know how to provide care for our loved ones when they face their end. By speaking about death, we will be able to face our own mortality. By speaking about death, we may begin to savor life.

For now, I leave you with some questions—meant to prompt your own reflection about how you view death and dying—by Judith Johnson, writing for the Huffington Post. I hope that they will help to make thinking about/speaking about death more accessible and less scary.

1. Which of the following best defines how and what you think/believe happens when we die? (More than one might apply).

*We simply stop being – going out like a fire. Our physical body dies and that is all we are.

* We are spiritual beings having human experiences and at death our body dies, but our spirit or soul lives on.

* We only live this one life.

*Our souls reincarnate, taking on different physical identities to work off karmic imbalances accrued from this life and previous lives.

*We go to heaven, hell or purgatory.

*Other. Please elaborate.

2. Did anyone educate you about death? If so, who was it and what did you learn?

3. Have you experienced the death of a loved one? If so, what was that like for you? How did it change you?

What do a memorial service, a wedding, and a blessing of the hands have in common? Other than a Jamie feeling both incredibly blessed and tired as they all took place within four days of one another? Other than the fact that it was such a privilege to play a part in each? On the surface, it may seem—not very much at all.

At the memorial service, as we remembered an amazing young woman, there were moments of laughter as those gathered recollected how she always kept folks on their toes. And, there were moments of tears—mourning not only for her life, but also aching for her story that could have been. At the same time, it was profoundly beautiful to see a community of people come together to reach their hands to one another…to offer words of encouragement…to hold each other in love.

The wedding was pure celebration as two incredible people joined their lives together in front of loved ones. There were moments of laughter—joy so pure it bubbled up, and moments of tears—remembering those who had died but were there in spirit. Rings were placed on their hands as vows were exchanged, and later, their hands were bound together in the ancient tradition of hand fasting. Of course, there was the celebration kiss and rounds of applause followed by a fabulous party. And, it was profoundly beautiful to see a community of people come together to reach their hands to one another…to offer words of encouragement…to hold each other in love.

The hand blessing took place at the home of an amazing woman who inspires me with her compassion and strength. In her living room she leads a support group for folks whose loved ones are living with frontotemporal dementia. Throughout their sharing there were moments of laughter as funny moments were relayed, but also tears as they spoke of the sense of loss. Towards the end of their time together, I read a blessing of hands to remind them of the work and compassion their hands are involved in every day. As I did so, they joined hands. It was profoundly beautiful to see a community of people come together to reach their hands to one another…to offer words of encouragement…to hold each other in love.

So, what do a memorial service, a wedding, and a blessing of the hands have in common? Each of these life moments—seemingly different—found their home in ritual and in community. Throughout our lives, ritual marks time as sacred—as set apart. Ritual has the possibility of creating a sanctuary—a place where our deepest sorrows, profound joys, and intense struggles can be held. And when community joins hands with ritual some beautiful happens—we find people who will share our tears, laughter, and struggle. In the midst of our deepest hours of need, in the midst of the greatest celebration, in the midst of struggles that threaten to overtake us, we find we are held by love. And, at the end of the day, isn’t that what it’s all about—to be held by love?

Sometimes, when working with families who are grieving, I see people struggling for a way to hold on to their loved ones–to grab hold of their memories. Especially with children who may be experiencing their first death. In some cases, I turn to beads with the idea being something like a rosary. As they touch each bead–usually symbolizing something particular in their heart–they can remember something beautiful about their loved one.

It got me wondering…if I were to bead some of my memories of people who have passed away, what would it look like?

A cupcake for my Nana–she was the first person with whom I baked. Lemon cupcakes. I can still taste them and feel a surge of pride at my first home baked creation. A recliner chair for my Papa–though he died when I was six, I can still remember the absolute knowledge I was loved as he held me in his arms while sitting in that chair. I can still smell the pipe smoke on his shirt. A sun for the way my Uncle Dennis’s smile could light up a room. A pen for my cousin Elizabeth–she became one of my early pen pals and made me excited to write back. A winking eye for the times my other Papa and I would wink at each other as we said in turn, “Hiya handsome!”… “Hiya gorgeous!”. And then of course, there are my precious patients…

A smiley face in memory of the first time a smile broke through a face–so often frozen by her form of dementia–for me. A heart for a patient telling me to use my heart and for reminding me, “in the end, it’s only love that matters”. An angel for the one who gave me my first glimpse of heaven when she described the angels in the room. Hand’s clasped in prayer for the one who always ended our visits saying, “let’s pray, mija”. A milkshake for the many chocolate and strawberry shakes shared. An exclamation point for a wonderful person who–being able to see beauty in even the hardest moments–would always exclaim, “oh wow!”….

It is inspiring to me the way memories take shape…I simply don’t have enough beads for them all. But if I did, I believe they would make the most beautiful strand of beads. And you…if you could strand your memories of those who have died, what beads would you use?

When people ask me how I can handle my vocation (usually with statements of, “wow, that must be so depressing. How can you handle it?”), I find myself replying, “Actually, I feel as though my work is a blessing”. Wikipedia defines blessing as, “the infusion of something with holiness, spiritual redemption, divine will, or one’s hope or approval.” So many instances I see flickers of holiness and redemption and those moments take my breath away. Especially as they come in sometimes unexpected places…

For the first time, I led a worship service at a facility for people living with Alzheimer’s’ and other related dementias. Many of these folks are pretty far along in their dementia and so I wasn’t sure what to expect. However, I knew God’s blessing was there the moment they began to sing the Doxology. And, the holiness seemed to infuse the space more as even the most timid voice later sang out on , “Jesus Loves Me”. For a people often forgotten by society, this blessing reminds them of God’s love–that God always knows them and their stories.

A week earlier, I did a memorial service for a young caregiver who recently passed away. Afterwards, I offered the blessing of the hands for the caregivers gathered as a reminder that their hands are instruments that provide dignity and love. Several residents there held out their hands for blessings as well. As I knelt in front of each resident, I looked into their eyes and took their hands in mine, “May God bless your hands with compassion”. For these residents—aging and losing independence—the blessing was spiritual redemption. God can still work through their hands and hearts to love this world.

I have seen a dying man no longer able to speak, beckon to his wife with his hands. The two have had their share of strife in the last 50 years and have only recently worked their way towards forgiveness. He took her hands in his, raised them to his lips, and kissed them. She then kissed his forehead. Their blessings were statements of hope.

What I am learning is that blessing comes in so many forms—it is the way we touch each other with care, the words of gratitude and love we offer to each other, a song that fills our heart, and forgiveness offered and received. I have learned that blessing can be offered and received no matter where we are in life—even as our bodies age and stop working, even as our memories fade.

Today, a person who became one of my beautiful teachers in life that taught me to open my eyes and heart to the blessings that exist all around us. I am grateful that I sat with him yesterday and told him the way he had blessed my life. Though he was non-responsive by that point, I believe he heard me. Because you see, that’s the other thing about blessing…it is never too late to offer or receive.

And so, I leave a blessing with you from a wonderful book, “To Bless the Space Between Us” by John O’Donohue. And, I ask you…What are the blessings in your life?

May all that is unforgiven in you

Be released.

May your fears yield

Their deepest tranquilities.

May all that is unlived in you

Blossom into a future

Graced with Love.

PS: The photo at the start of this entry is a beautiful Albuquerque sunset I took one night while driving with my daughter. It was so stunning I pulled over to the side of the road so we could admire it. I believe that God blesses us everyday with moments like that…We just need to keep our hearts open to receive.

By now, it is probably clear that I live a good portion of my life standing on top of the hospice soap box. I truly believe in the gift of hospice–the gift of allowing people to both die and live with dignity, compassion, and beauty. So, I decided to let my readers hear it from someone else. I recently went to visit the daughter of one of the women with whom I was blessed to work. The daughter was sharing her wish with me that everyone could know how wonderful hospice is–what it can mean to a family as they confront mortality. And thus appears my first (hopefully not last) guest blogger.

In a single moment of clarity a path was chosen for mother’s end of life. It was to bring her home with the loving support, care, and guidance of family, friends, and the remarkable staff of Hospice de la Luz.

There were many unknowns that came with this choice–ever changing details needing attention. What did remain a constant was the reliable, warm and caring guidance given by the hospice staff.

In choosing home hospice for my mom I had some fears. Greater than any fear or worry was the certainty that this was the most loving thing I could ever do for my mother and our family. By entering into this process with an open heart and a willing mind the experience became a gift like nothing else could ever be.

In choosing to share our home through out such an emotional, spiritually intimate experience I quickly realized that whatever barriers I had built up over the years were best removed. As it turned out, this gift for my mother was also a gift for me.

Thanks to the hospice staff I had the freedom to feel. At times there was laughter, other times tears. And then there were the times of contented quiet. Sitting beside my mother, gently holding her hand, knowing that she was ending her life in the familiar comfort of her home with the love of her family and dear friends surrounding her.

(Jamie’s note: How well I remember this patient and her daughter–afternoons on the patio with a cup of coffee and hands open in prayer. The people with whom I work live on in my heart long after death arrives. What a blessing it is to be in this vocation)

Over the last couple of weeks at work, I have witnessed many beautiful moments—a grand-daughter (grown) caring for her grand-mother with a smile on her face, a son tenderly kissing his ailing father on the forehead, a family join hands in prayer around the bedside of their actively dying loved one, and laughter echoing through the room as memories of times past are shared. In each moment, there were tears. One patient said to me as she was crying, “I’m sorry. I’m such a cry baby”. I wonder why we are sometimes afraid of our tears. I have often thought of them as the partner of laughter. Tears are a form of expression…tears speak.

Tears fall for many reasons in our lives. Sometimes we cry tears of joy—joy at the birth of our child, a graduation, a marriage, a happy memory. Tears often fall down our face because of a sadness inside that is so overwhelming it can only be expressed through tears—news that life is changing in challenging ways, a fight with a friend, the injustice that pervades our earth, the death of someone we love deeply. Sometimes they start slowly—the one small tear rolling down our cheek. Sometimes they gush out. Sometimes they stay locked inside. Tears can be expected, or catch us off guard. Sometimes, they come silently and other times, with a choking sob whose sound reverberates through the space we occupy. Whatever the case may be—one thing is for certain—In the words of Washington Irving,..

“There is a sacredness in tears.

They are not the mark of weakness, but of power.

They speak more eloquently than ten thousand tongues.

They are messengers of overwhelming grief, of deep contrition, and of unspeakable love”